Refractory Epilepsy and Controlling Seizures

[TKDTyler]

That still seems like an inordinate amount of meds in a very short time, but I won't belabor that. As for working while having that many seizures, my seizures never lasted very long, probably 10 seconds to a minute, and when I had them I might get pale, smack my lips a little, and pause or get a bit confused about what I was saying, but I always knew what was going on and got pretty good at being able to carry on during and after the seizure. Lots of people wouldn't necessarily notice much, or would just think I was thinking about what I wanted to say. People who knew me well could always tell. I would have them occasionally when walking or riding my bicycle or even driving and never had any issues. They definitely took a toll on me, though, and on days when I would have 8 or 10 or more I would be pretty beat by the end of the day. I had seizures while I was in college getting a BA, while I studied for my Master's and while I worked for 15 years as a social worker and 15 as the owner of a bicycle shop. I've been seizure free for almost 3 years now. That has been mostly due to tracking and then graphing my seizures which enabled me to find a pattern and adjust my meds to stop the seizures. Click on the seizure tracker link by my sig and try it for yourself. It's always a good idea to keep a record of your seizures, but unless you have the numbers in a visual form it's hard to detect any pattern. Best of luck to you.

Thank you for your reply. I currently keep a hard copy log and in app lot of my seizures for my doctor and lawyer to see. However thanks for linking that site, I've never seen one which showed patterns and graphs too. And going back to what you said regarding work, my seizures usually last a few minutes now as they have progressed. I also apparently have some crazy hallucinations about suits of armour and a lot of other off the wall things. Mine are very noticeable to someone who knows about seizures and even if you didnt know, from the videos I've seen I would look like im crazy haha. Someone mentioned before that marijuana worked and I have also tried that and it is the only thing that keeps me seizure free totally. Unfortunately it's not legal here and moving isn't a viable option right now. My doctor is however going to try me on Valium to see if surpressents will do it since that's what marijuana is and it helps so much.

I apologize if I rambled any but I appreciate your replies and wish everyone else just as much luck with finding relief!

 

[CQ:)]

My doctor highly recommended me not to work and I've still tried anyway so I'm not stuck in a house but no one will hire me with my condition. They obviously don't say that due to equal opportunity laws set in place but what type of place do you or others with complex partial TLE recommend work?

It can be hard to find work when your seizures arent controlled.

I work in administration, before my surgery I had a lot of trouble getting work. Every job I did get was either part time or casual work, when I hit over stressed it increased more my seizures which were complex partials so my job would usually be made redundant. I refused to sit at home feeling sorry for myself so when I wasn't working I was going courses to increase my experience or doing voluntary work.

I volunteered at a charity shop on and off for 9 years and a nursing home for about 7 years.

When I was going through my pre surgery testing I had to have a neuro psychological evaluation. As part of the evaluation I was asked how the epilepsy affected my life and what I hoped to get out of the surgery. I said to the neuropsych that all I hoped was to eventually be able to work full time.

In 2013 I got a full time job working as a receptionist for a building company. They knew from day 1 about my epilepsy, they never had issue with it or when I need time of for my medical appointments.
They are pretty much amazing employers and the co workers are pretty good as well.
I don't have too many seizures at work but they know what to look for if I do and when I do feel a seizure come on I go into the kitchen so one of my Co workers know to keep eye on reception.

It is rare to find by good employers but they are out there

 

[hydrogyrum]

arnie speaks truth, Tyler. Don't let anybody cut your head open until you're ready for it.

My docs are conservative, I guess.They haven't suggested to me the prospect of surgery, of which I am glad. Once they chop into your head, they cannot go back. Do you like your head, even with its problems?

For the most part, I know what's going on during my seizures. I hate this, but the fact that I'm semi-aware shows me that I am in control. I might drool, I might say stupid things, but I still know that I'm in control because I REMEMBER. You are 21. A ripe old age for medicos to screw you over. Do you not give into them until you decide for yourself what is best for you. Chopping into your brain at this age is not good for you.

We all have a limited time on this earth. It doesn't matter what other people think of us. Protect your brain from medicos who want to chop into it.

 

[Nakamova]

Chopping into your brain at this age is not good for you.

No-one should enter into surgery of any sort without feeling confident in their decision. The decision-making process should involve researching the treatment, the pros and cons, surgical risks and potential side effects, as well as the practitioners involved. That said, some studies indicate that early surgical intervention for certain forms of epilepsy can be beneficial. For a discussion of some of the relevant issues, see:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC321163/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4234051/

 

[Sabbo]

Hi. I've also tried every AED out there, & have refractory epilepsy. Although I take Vimpat and Topamax--400mg/day of each, I get breakthrough Simple & Complex Partials. I average 1-3/month. The Simple Partials don't really bother me, since I can feel them coming on, & they are over within a few minutes. It's the Complex Partials that are troublesome for me because unless I have a witness or do something to myself/my surroundings during it, I'm unaware of its occurrence. I know I had one last Saturday morning (I burned myself--again).
I tried to work after completing my BS, but after some dangerous situations, I said it wasn't worth it. One day, I was at the train station--the next thing I knew, I was in the ER. Another commuter prevented me from falling onto the tracks during a Complex Partial. Another time, I'd just left the office & I collapsed on the sidewalk, & came to at the ER.

 

[hydrogyrum]

Hi, my name is Tyler, I'm 21 and I'm new to the forum. I was diagnosed with complex partial TLE over two years ago and am considered refractory. I have on average about 15-25 seizures a month. I've had two 15 min EEG's, a 3 hour EEG, and an overnight EEG with one abnormality on one of the test. I've also had a normal MRI with contrast....).

Now that my history is established, I am curious from personal experience what are the chances of medicine controlling my seizures after this time....

My other question is based off my symptoms... nausea (sometimes I vomit), dead tired, and headache. Outside of seizures my short term memory is horrible as expected with seizures,.....

Dude. I feel for you. I was diagnosed with RIGHT temporal lobe epilepsy and "abnormal brain waves." I've been on Keppra for about 6 months, Depakote for 3 days, and right now Lamictal. I've had a buttload of seizures on Lamictal, but my neurologist nurse practioner just prescribe an updose of this horrid drug ... before I go to another hospital's level 4 epilepsy department.

Nausea--I vomit at leat once a week. It has come to the point that I must enjoy this experience, as it's my common experience.

Short term memory--this, too, has been my experience recently under Lamictal.

My situation is that I got seizures after a traumatic head injury. I don't know your situation, but I feel for you. I'm 48, you are 21. I don't know what to say, except that maybe you must try aonother drug (?). I'm going to a better Level 4 epilepsy center maybe this is the course for you...?

 

[Sabbo]

When it comes to having kids, anyone who says don't do it is nuts. I have 2 healthy sons. During my first pregnancy, Dilantin was the only AED I was on--300mg/day, & my doctor just raised my folic acid to 4mg/day. During the second pregnancy, I was also taking Topamax, & my doctor raised my folic acid dose again.